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Post by lugg on Jul 26, 2020 19:15:18 GMT
We are all amazing, Lugg. Of course we are - but I admire the way you in particular deal with life with Parkinson's disease
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Post by questa on Mar 16, 2021 13:19:50 GMT
It is about time I added to this journey along the track as it is a year or so I last checked in. I have been fortunate in that the crazy happenings of 2020 scarcely touched me as I live a fairly isolated life anyway.
With all the heroic work being done by the health workers I cannot blame them for slipping up and not sending my check-up appt time to me. As autumn came I fell into my seasonal miseries and gave myself and friends a bad time. Depression is very common with PD but this was murkier than usual. Another change of meds and back on the merry-go-round.
Strangely, I seem to have recovered a few symptoms that I had lost. My voice has become deeper but more audible to others, my shaking hand has steadied, my eyelids are back in place again(You scared them, Mossie) and Joy oh Joy I have practised and can write again with a pen, Before my script was a mess of tiny letters all running up-hill. It is tiring but I was always pleased to write stuff in a neat italic style.
At one stage I could not stand up from a chair or turn over in bed but I think have put on more muscle. I lost 2 kg of fat so that probably helped. I was still falling over 3-4 times a week scaring the hell out of my grandkids. At one fall that saw me land spread-eagled on a stack of fine glasses the shattering noise and tinkling hurt more than the bruises.
I was losing trust in myself with the falls so started to analyse them. I found that every fall happened when I was hurrying. The part of the brain that keeps balance slows my body down but the legs don't get the message and I am left with legs trying to pass the upper body...like Wil E Coyote and Road Runner cartoons. Easy fix...No Rushing around, let the phone ring out but a steady walk stops falls. I have lost balance several times but not crashed.
Since I first "met" this bunch of adventurers riding out the storm I have been impressed by the correctness of spelling etc. Dear whatagain has his own dialect du jour which I will now follow. Because my fingers hit any key about 4 times I have to go back and correct, and gaps appear for no reason. It is so tiring, so i will be ignoring all the ddoubles and misspels so long as the meaning is clear.
Right now I am nodding off over the keyboard...Part 2 will feature the drama of thee new house and my friendly ghosts that i see and you can;t Good night...Questa.
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Post by mickthecactus on Mar 16, 2021 13:39:07 GMT
My admiration goes out to you questa.
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Post by mossie on Mar 16, 2021 15:13:51 GMT
My sympathies Questa, in Chrchill's words, 'just keep buggering on'.
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Post by onlyMark on Mar 16, 2021 15:34:11 GMT
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Post by kerouac2 on Mar 16, 2021 16:30:23 GMT
Thank you for the update, questa. Even without any identifiable disease, I recognise a few of your difficulties in my own life, and I have certainly learned not to try to do anything fast. But I was never fast anyway.
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Post by questa on Mar 17, 2021 0:09:39 GMT
Questa, just checking, but you are aware of the facility on Windows to dictate text? Called 'Speech Recognition'. I tried it and it worked more or less ok but you need to train it. Thank you, Mark, I will keep this for future reference, but you do recognize you are talking to the most inept technology failure that ever crashed a computer. I have a clever tech man who told me (when I took my non-functioning PC to him for the 3rd time in a year) that when I foul things up, I do it in a most creative and intelligent way, as if I were trying to make it self-implode without me doing anything wrong. I don't know if this is a compliment or not. I still have to re-learn how to post pictures and how to use a mobile phone.
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Post by questa on Mar 17, 2021 13:13:53 GMT
Half way through the year my eldest son and his CPA wife surprized me with a proposition.They had been concerned about my falls and the distance between our homes and their perception that I soon would need a bit of help.wife had worked out a plan with an eye to the strong AU dollar and the drop in house prices.It wound up that they bought my unit in a high demand area and stripped it out and renovated and sold it for a good price.
This went to buying my unit in the retirement village a 5 minute walk from their house. They had everthing drawn up and I wasn't allowed to go through the paperwork...just sign here and here and don't waste time.It was a blur of documents then on a Friday afternoon I was told to start packing we have to have my unit emptied out by Monday lunchtime.Trailers were borrowd, mates called to help and their wives wrapped everything in newspaper and we made it but I an still finding stuff. It took 4 months to unpack and I am still waiting for some things.
You can imagine how upset I was, appreciative for the unit but angry and upset at leaving my friends and house.My Parkie specialist has referred me to psychologist to deal with this and i'm picking up the pieces.I had not been in the planning and psych says that as a normally powerful woman it was my powerlessness that fuelled my anger. Parkinsons carries a fairly common occurrence of paranoia, but I think this was just pissed-offness/
Now for a laugh...sort of. About this stage of the disease some people get hallucinations.I was washing glasses and looked down to see a little girl sitting on the step near my kitchen, We had a few friends drop in and, among them an Indian couple. The child was about 6 and wearing a green sari. I talked to her for about 15 minutes, she just looked at me shyly. Then I thought the parents woudd be looking for her. I started to walk to the back door ....and the whole thing was a wide-awake dream.
My brain had created the kitchen, steps, even the "We'. She has has roles in other scenarios but not as surprising. So far they have been amusing or doing something silly. The worst ones are when I have asked someone to do something for me and I come back and nothing has been done. I realise they weren't there at all.
greetings from another dimension, Anyporters
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Post by mickthecactus on Mar 17, 2021 13:49:30 GMT
Gosh.....
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Post by bjd on Mar 17, 2021 14:36:17 GMT
All is not lost as long as you are conscious of your abilities and able to figure out what is due to the Parkinsons. When I first started reading your latest post about moving, I thought "Again? She moved not long ago." Then you mention 4 months ago. Remember that you were pleased about the move then -- it will take a bit of time to get over the annoyance/anger.
Good to hear that you have recovered some of your physical abilities too.
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Post by mossie on Mar 17, 2021 15:19:49 GMT
Wish I could help......
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Post by kerouac2 on Mar 17, 2021 15:56:33 GMT
Friendly hallucinations are probably a good thing as long as they do not lead you into danger.
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Post by cheerypeabrain on Mar 17, 2021 17:55:02 GMT
I am not surprised that you got pissed off Questa, you are a strong lady used to managing your condition and making your own plans. Brilliant that you can now write more clearly (and more importantly, to your satisfaction!) I didn't know that you could 'get back' things that you have lost, that is encouraging. I didn't know about the trippy hallucinations...that must be quite startling.
You are a bloody marvel and an example to us all.
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Post by mich64 on Mar 17, 2021 20:28:05 GMT
I can relate to feelings of anger and frustration Questa. My family(still) makes most of my decisions and as well talked all around me for the first few years after my brain injury because I could not talk, they forgot I could listen and that I could understand most of what was going on around me, it just did not look like I did due to my frozen expression and large wide open eyes. I had to learn to write again too, typing came back quickly though. Thankfully, my husband did get me help with a psychologist early on as well Questa. We went to him every two weeks for 10 years until he retired. I miss him, he really helped me with acceptance and how to manage my new life.
I admire your strength and independent nature Questa and I hope you still get to see your friends from the other neighbourhood and that you find more in your new community!
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Post by questa on Mar 17, 2021 23:55:49 GMT
Thank you, but please recognise that it is the support I get from my friends in this forum that gets me through. Kerouac has raised one important issue...keeping safe when in my dream stage. I don't sleepwalk very often and sometimes I am in a state of half dream, half reality. Recently a friend loaned me a floor lamp with 2 LED lamps on a stand. I was worried as the top light kept flickering and asked him to fix it. "It's OK" he said, "Tomorrow" I went to bed worrying about the light, In my dream I walked into the room with the dodgy lamp, found a screw driver and prised the back off the faulty light switch.I can still hear the sound as the plate whizzed past my ear and hit the coffee table. This stopped the flickering so I went back to bed.
Next day my friend went to fix the lamp and said,"Who has been mucking around with this?" I denied any knowledge and pointed out I would have unscrewed the back plate, not wrecked the switch by levering it out. He showed me the small group of screws placed in a "tip pointing in" pattern which I always do. Then it started coming back...I had done it while asleep and dreaming. Fortunately I had unplugged the lamp from the wall before going to bed.
Gives a whole new meaning to "The Lady with the Lamp"
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Post by questa on Mar 18, 2021 0:17:12 GMT
they forgot I could listen and that I could understand most of what was going on around me, it ju This applies to all people, even in the last minutes of life. The sense of hearing is the last faculty to go. Patients who have spent time on life support and have been clinically dead have recovered and repeated what was said in their coma. Patients having a general anesthetic can hear what the Theatre Staff say, so there is a group advising staff to only say positive remarks as the patient can understand what they say. Mich, it must have been hell to be unable to communicate with others. I admire your strength in fighting your way back.
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Post by whatagain on Mar 18, 2021 8:20:29 GMT
Questa, i am stunned. Mesmerized (just learned the word and like it as much as curmudgeon). i knew you are a tough lady but your last posts are incredible of tenacity, strong will, stubborness against the odds. Ok, i have read about the Aussies on the Kokoda trail or dug in Tobruk, but you are of the same kind. Not only do you not give up, not only do you recover ground but what is really beautiful is the underlying love of others that transpires from your posts. You make light of your falls but are concerned that your loved ones might get some fears for you. I am in great(er) admiration of you, Questa. Take care, don't let anything go ! Bisous.
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Post by questa on Mar 18, 2021 15:03:06 GMT
Oh Watty, I am truly discombobulated by your words. Putting me in the same breath as the Desert Rats of Tobruk and the Kokoda fighters is an honour I could never deserve. I will, however carry your words with me wherever I go and read them when things get tough and I start whimpering like a sook. I know that you are having health challenges yourself. May it all go well for you, and thank you for your good example and wishes.
Here is a new word for you...SOOK rhymes with book NounE · (Australia, Atlantic Canada, New Zealand, slang, derogatory) A crybaby, a complainer, a whinger; a shy or timid person, a wimp; a coward.
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Post by fumobici on Mar 18, 2021 17:30:51 GMT
I've also heard (albeit rarely) "sook" in the US Midwest, but usually as the adjective "sooky" rather than the noun.
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Post by Kimby on Mar 21, 2021 22:41:02 GMT
Questa, vivid hallucinations were very much a part of my father’s experience with Lewy Body Dementia, a form of Parkinson’s.
He started out having motion problems, then began “losing his mind” as he called it when he’d lost his train of thought in the middle of telling a tale.
His hallucinations were of fishing, and he went through the motions of casting, reeling in, and tossing back the “little ones.” It was so real to him. He also spoke to people who weren’t there, to our eyes, anyway.
I’m glad to hear you are doing better, questa, and hope you continue on this plateau a long time, or rise to a higher plane.
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Post by questa on May 6, 2021 6:01:36 GMT
Oh Boy! Have I had a few rough days lately! Over the last few months ago my writhing and twisting full-body movements have increased. Then I developed the same dystonia of the head and neck and the spasms from that had me extremely vexed. In brief, the muscles that are used in head/neck go into tight spasms and stay like it for up to an hour or so. The muscles pull against their opposite number, twist into knots or just clench down and make me use naughty words.
My brand new GP waved a magic wand and got me into the clinic that does the Botox treatments and yesterday I had 5 injections in and around the screwed up muscles. Naturally I read up on it in the interwebz and scared myself spitless. The process was said to be painful and full of hazards and the after effects had a list of terrifying sequalae, but the pain I was getting was so intense I knew I had to do something.
So I let the doctors have their wicked way and they injected 5 doses of Botox into my neck in various places...10 minutes and I was done.
Today I have much less pain and can turn my head again. I am generally OK with all-over stiffness and discomfort. I have to have this done every 12 weeks but it says it takes about a week to kick in properly. My head and scalp and neck twinge a bit...I can just hear them singing "My achy-braky muscles" I can't understand why women will pay for this as a 'beauty treatment'.
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Post by spaceneedle on May 6, 2021 6:29:16 GMT
Questa, you are a brave soul, moving house is stressful no matter what the circumstances!
It is really difficult as we age to accept that we need help. But try to focus on the fact that this new move will likely give you more freedom and security in the long run.
Hang in there!!
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Post by kerouac2 on May 6, 2021 6:37:34 GMT
I hope this is the magic bullet, questa.
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Post by questa on May 6, 2021 10:07:02 GMT
With my luck the bullet would jam in the chamber!
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Post by questa on May 6, 2021 10:18:21 GMT
That is my intention, Spaceneedle, unless something better comes my way. Thank you for your kind words.
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Post by mickthecactus on May 6, 2021 11:00:30 GMT
Indeed, you are very brave questa. Don't let it grind you down!and think how smooth your skin will be...
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Post by cheerypeabrain on May 6, 2021 17:22:48 GMT
Good grief. I hope that the botox works meduck. You made any mates in your new area yet? Are there any communal facilities?
My sister lives in a gated community/retirement village. Theres a big social space where they can meet for activities (nothing boring...cheese and wine parties, guest speakers etc) altho Peggy only goes to the odd one. There's even a guest room in case any of the residents want a visitor to stay over...as all the units only have one bedroom. Peggy was only 54 when she moved in when she was widowed and is still the youngest resident, but she loves living there.
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Post by mich64 on May 6, 2021 18:49:59 GMT
Good to hear your doctors got you Botox injections Questa and that you feel relief this morning. My sister did shots for a couple of years and it was very helpful for her, although everyone is differnt, it worked really well for her.
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Post by questa on May 7, 2021 11:01:08 GMT
Mich, you say for 'a couple of years.' Why ddid she stop if it was helping. I guess expense would come into it but mine is for free. Today I have had a stiff neck and I can turn my head carefully.
To add to this week's fun and games, I went to my skin check doctor today. 19 pre-cancers frozen off...hidden in my L eyebrow, all around my hairline and scattered over my face and hands. More "ouch-ie" than the Botox but bearable.
I can't have my vax for 2 weeks after the botox so I guess that will be the next session.
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Post by lugg on May 7, 2021 20:03:41 GMT
So glad the botox worked for you Questa and that you are moving more freely. To add to this week's fun and games, I went to my skin check doctor today. 19 pre-cancers frozen off...hidden in my L eyebrow, all around my hairline and scattered over my face and hands. More "ouch-ie" than the Botox but bearable. I love your cup half full attitude Questa.
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